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Discussion:
Misdiagnosed?
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Hi, I am a 36 yr old female that was diagnosed in Feb of 2008. I will give some background info and will try to make it as brief as possible.

In Jan 2008 I became I'll with flu like symptoms, after a trip to the er, I was told it was a viral infection and was sent on my way. A week after, when I felt no better and had developed a rash from neck to torso, I saw my primary care Dr. He was baffled. He did blood work along with several tests (Epstein Barr virus, cmv and HIV, just to cover all bases). A few days later I was admitted to the hospital for possible leukemia due to severely low wbc and platelets. It was determined the next day that I did not have cancer. I was told that my ebv and cmv tests came back and that was why I felt ill. A few days later, my HIV test came back indeterminate. I instructed my fiance at the time to go the the health clinic and get tested in case. (I was and am not a drug user, prostitute, nor promiscuous). Two weeks later, his test was positive. I called my Dr and he said I had to wait 6 weeks to retest. In the meantime, I bought a test from the pharmacy and got a rapid oral test from the clinic, both of which were negative. Because my fiance was positive, and I had been I'll, an infectious disease Dr agreed to see us together and performed viral load tests on both of us. Keep in mind, I had still not received a positive antibody test. fast forward two weeks and his viral load was over a million copies and mine 95,000 with a cd4 of 632. We both started arv's and the next viral load test a month later, I was undetectable....4 yrs later and I have remained undetectable. No blips...ever. cd4 always well over 1200. Here is where it gets interesting. I am pregnant...the Dr ordered an HIV test even though he knew I was positive, as it is standard. It was negative. They have repeated it 4 times and all are negative. They asked me to provide a background as to how I was diagnosed and I told him I had never had a positive HIV test. I go back in one week and in the meantime they are consulting with my HIV Dr. I have been doing research and have found that HIV negative people can have viral loads. I am so stunned and confused. Any input, advice?
Posted on 07/01/12, 12:12 pm
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Comment:
Email me when others reply to this topic help
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Reply #1 - 07/04/12  2:55am
" All I have to say is WOW!!!
Good news for you :) "
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Reply #2 - 07/05/12  11:01am
" Wow thats interesting! Good for you. I just returned for a HIV test and it was neg. When did you come in contact with this dreadful virus? Where are you from? USA here. Sounds like bad testing to me or its gods work. "
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Reply #3 - 07/05/12  11:05am
" It sounds like you never had the virus. It takes a normal person 25 days to test positive in the most extream case 3 mths (thats if you have cancer or chemotherapy) So by you tetsing neg all these times tells mes that you were neg. But you said that your BF turned out positive, Did you guys have unprotected sex at all... what was his backround (mutiple sex patrners possible exposure) You gave us yours Ill be interested in hearing from ya "
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Reply #4 - 07/06/12  10:10am
" KBuddy: yes, I'm from the US.

Me and ex had had unprotected sex. He was a retired army ranger and as far as I knew, was drug and disease free. Silly me. I have contacted an attorney, not necessarily for monetary reasons but to get a ruling that my newborn will not have to endure at at birth. A mother cannot refuse treatment for her child without the state stepping in for child endangerment. I will keep everyone posted. "
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Reply #5 - 07/06/12  1:43pm
" With any medical test, both false positive and false negative results are possible. There are many different tests for HIV. The standard tests are an ultra sensitive ELISA which has a fairly high (like 0.5% or so) false positive rate but a low false negative rate. People who test positive by the ELISA are then given a western blot which has a much lower false positive rate, to confirm infection. ELISA and Western blot tests look for anti-HIV antibodies in your blood, so it takes a couple weeks or more for you antibody levels against the virus to rise before they become positive.

The viral load tests look for viral RNA (the virus genome) in your blood serum. These tests have a significant false-positive rate, so they are not used for routine screening for infection.

It is quite possible that you got infected with HIV and got on the treatment so early that your body did not make a lot of anti-HIV antibodies. It is also possible that you are not infected. If you were not pregnant, it might make sense to go off treatment to see if your viral load becomes detectable without the drugs, just to prove that you really are infected. But during pregnancy this would not be a good idea.

Very similar to going off treatment yourself, would be to have a sample of your blood cultured for a few weeks in a lab, with no antiretrovirals, to see if the virus can be cultured from your blood. This is not a standard thing, and would require a research lab at a university or research hospital, rather than a standard HIV testing lab. Your case sounds very interesting so it is quite possible that a HIV researcher at a university near you would be interested.

Please follow up on this, and let us know what progress you make. "

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